A rare, muscle-wasting disease cruelly strikes them down almost randomly, leaving them in wheelchairs for the remaining years of their short life.

Parent Project UK (PPUK) is now in a race against time to make inroads into eradicating Duchenne Muscular Dystrophy (DMD). The group’s Elmbridge members last month organised a fundraising event at Silvermere Golf Club.

Speaking to the News & Mail, PPUK founder Nick Catlin believed the condition could be tackled but will need understanding and money from both the public and Government to find a cure.

“Some 150 boys are born and die with this disease every year and it seems to go unnoticed,” he said. “If 100 young men were killed in a train crash, there would be a national outrage and an inquiry but this is happening year in year out.

“It should be a national scandal that 100 young men in their prime of life are dying of a potentially-curable disease.”

The charity started around four years ago when Nick’s son was diagnosed with DMD, a severe and progressive muscle-wasting disease.

Sufferers face much of their life confined to a wheelchair and, without help, will die in their late teens or early twenties.

“We were told that there was no cure or treatment for the disease,” Nick said. “So, we got together with other parents to campaign for a cure and to raise funds for specific research projects.

“One of the first things we did was go to the Government and ask them questions like ‘why is research in this field never done?’ It’s a genetic condition so it can hit anybody. It’s not race or class specific.”

In seven out of 10 cases, the disease is hereditary, but for the remaining three it can strike out of the blue.

The group’s persistent campaigning, letter writing and fundraising has led to a grant from the Department of Health towards research. Clinical trials start at the end of this year.

“There are other international trials going on at the moment,” said Nick, “giving us families a great deal of hope for the future that something will come along to make a difference to our boys’ lives. We have started to fund specific research projects out of events that groups in Surrey and other parents are organising.”

An international conference now takes place every year, with the cream of researchers from across the globe discussing DMD.

The problem gene is carried by women and it almost exclusively affects boys because it lies on the X chromosome.

Nick said: “My son was a spontaneous version of the gene that happened right out of the blue. Statistically, it occurs in one in 3,500 male births.

“We want to give those boys their lives back and, at least in the first instance, slow down the promotion of this disease so it doesn’t happen so rapidly.

“As they start using the muscles, they get repaired but continue to break down until they don’t get repaired again. It’s a bit like slowing down the ageing process. They age in 15 years whereas we age in over 60.

“The second thing is to fix the gene permanently so they don’t have any permanent disability. When our son was born five years ago, there was research going on but nobody really had much optimism about the future.

“Now, in the last two years, things have changed rapidly and there’s a lot of hope and optimism but, like with everything in life, if you don’t get sufficient money to solve the problems, it doesn’t happen.”

PPUK focuses on bringing families and their relatives and supporters together to raise awareness of the disease and lobby government into funding more research.

There is also an inevitable comfort and strength from mutual support.

“When our son was diagnosed, I can’t describe how devastated I was,” said Nick. “You’ve got this little boy and you’re told he’s going to be dead by the age of 20 and spend a lot of his life in a wheelchair.

“Your first reaction is, what disease? It’s part of the process of raising awareness with the general population so we begin to understand what’s happening.

“It’s not just pie in the sky. They know what the gene looks like. In 1986, they discovered its structure. They now know the problem and they’ve got to find a way of fixing the gene.”

Meanwhile, the increase in life expectancy brings further problems with breathing difficulties due to muscle failure. Nick said: “They don’t expel the carbon dioxide out of their bodies, which leads to respiratory infection and lethargy. It’s a killer for the boys.

“The simple solution is to give them breathing support through air and oxygen that they can either take in at night with a face mask or in the wheelchair and that helps them to expel the carbon dioxide.

“Medical staff are now seeing the heart as another muscle. It might not quite be working properly so they treat it more carefully and use commonly-available drugs to stop it developing so rapidly. They can put years on those young men’s lives. It could be up to another 10 years.”

A next step for the charity is the launch of a major project aimed at creating a gene registry of every young DND young person throughout the country. They hope it will be able to hold all the genetic information on these young people to inform clinical trials and research.

“We really want to get all these families on board and realising that it’s happening,” said Nick. “My personal feeling is that it’s not whether there’s going to be treatment for DND but when.

“We are accelerating the process and letting these young people live normal lives. It’s got to stop for the sake of them and also for me and my son. I want him to outlive me. We don’t want another generation of boys to go through this.”